My latest problem is getting me down. Until about 10 days ago I was reasonably comfortable in bed but now, every night I start coughing and it escalates for 2 hours after which I am inhaling snot and saliva with every gasp. My face and neck are also dripping in the same. The mucus in my chest can't be coughed up so I just keep coughing ineffectively. It's deeply unpleasant and exhausting but I don't think there is any solution; I already have the bed head raised.
During the day I am also more prone to coughing and I spend all day sitting by my bedroom patio door so I can wedge my feet against it to prevent me sliding down in my wheelchair when I cough. I spend much more time with my head down which enables easier swallowing but I can't use the eyegaze or watch TV. And the effort to lift my head each time is monumental! So I am thoroughly sick of everything.
Tuesday 27 November 2012
Wednesday 14 November 2012
Maximo Park
Last Wednesday we went to see Maximo Park at Shepherds Bush Empire. We saw them about 6 years ago and were impressed with them live. Tracy got the tickets for me as a father's day present back in June.
Shepherds Bush is much nearer than the O2 but parking is a bit of a lottery so I made the extravagant decision of hiring a driver to drive our car, relieving us of the stress of finding a parking space. It proved to be useful. We had been told to use the stage door entrance which was accessible from the rear of the venue. So we drive around to the residential road backing on to it only to find there are no drop kerbs anywhere near the passageway leading to the venue. We have to be dropped 100 yards away. Then at the stage door we are told we can't actually enter there; we were just instructed to go there to collect the tickets and we now needed to go right around to the other side of the building where they would set the ramp up. When we got there I was freezing and starting to shake. We couldn't believe it when we were told they stored the ramp in the toilet, and yes you guessed it..! Fortunately they weren't long and we finally got in.
There is only 1 wheelchair space but it is well placed and although it's at the back, it's a pretty intimate venue. Maximo Park came on at 9-25 and kicked off with two tracks from the new album. Paul Smith is a brilliant frontman and quite mesmorising because you simply ignore the other band members, who apart from the keyboard player remain almost static throughout. For those of you not familiar with them, here's a video of one of their bigger hits
They played until 10-45 and were still as good as 6 years ago. We texted our driver who picked us up and took us home
..
Shepherds Bush is much nearer than the O2 but parking is a bit of a lottery so I made the extravagant decision of hiring a driver to drive our car, relieving us of the stress of finding a parking space. It proved to be useful. We had been told to use the stage door entrance which was accessible from the rear of the venue. So we drive around to the residential road backing on to it only to find there are no drop kerbs anywhere near the passageway leading to the venue. We have to be dropped 100 yards away. Then at the stage door we are told we can't actually enter there; we were just instructed to go there to collect the tickets and we now needed to go right around to the other side of the building where they would set the ramp up. When we got there I was freezing and starting to shake. We couldn't believe it when we were told they stored the ramp in the toilet, and yes you guessed it..! Fortunately they weren't long and we finally got in.
There is only 1 wheelchair space but it is well placed and although it's at the back, it's a pretty intimate venue. Maximo Park came on at 9-25 and kicked off with two tracks from the new album. Paul Smith is a brilliant frontman and quite mesmorising because you simply ignore the other band members, who apart from the keyboard player remain almost static throughout. For those of you not familiar with them, here's a video of one of their bigger hits
They played until 10-45 and were still as good as 6 years ago. We texted our driver who picked us up and took us home
..
Tuesday 13 November 2012
Muse and Top Gear
Two weekends ago we were very busy. We saw Muse at O2 Arena on the Friday and Saturday morning went to Birmingham to see Top Gear Show!
We got the VIP parking arranged again for Muse, so other than the horrible 2 hour journey it wasn't too stressful. We got there with sufficient time to queue in the slowest queue ever for merchandise. People in front of us were actually trying on T shirts for size!
We had seats on the front wheelchair platform and the boys were fairly nearby in the seats behind us. The stage layout was unusual as they had decided to have seating behind the stage at the middle tier. I guess it allowed a couple of hundred extra tickets to be sold but it meant that they built a walkway around the back of the stage and built the sides up high. It meant that the back of the stage was obscured and although I could see the band most of the time, having a huge section of stage side wall my field of vision was quite distracting.
Muse opened the show with a couple of tracks from the new album, off which they played almost every track during the gig. With an increasing back catalogue to choose from, they still managed to include many old crowd pleasers including Jake's favourite, Plug in Baby. Matt Bellamy gave Jake a new challenge by playing the main riff while spinning around with the guitar above his head. I can imagine the carnage in Jake's bedroom!
They played faultlessly as usual with the singer hitting even the most ridiculously high falsetto note. However there is a small part of me that wonders if the 3 of them and the session keyboard player stopped playing, how much sequencers were being used. I think sometimes I would rather hear a less album perfect reproduction in favour of a rawer live sound. Great gig though.
On Saturday we headed to Birmingham for the Top Gear show. I took the boys a couple of years ago when they did both a London and Birmingham show but for whatever reason it's only Birmingham now. But Luke is such a massive Top Gear fan, we decided to go and commandeered my sister's husband David to help with the driving. Our show was at 3-45, so we planned to arrive at 2 to look around the exhibition although by the time actually got in we only had 45 minutes. It turned out to be sufficient as it was much smaller than the Earls Court one. The boys were very happy to see a Bugatti Veyron for the first time.
Our experience of the show's organization hadn't been great so far having been directed to the wrong gate to get dropped off then David had to drive somewhere else to get a ticket for disabled parking.
Next we were ushered with everybody else to the arena entrance only to discover 15 minutes later they had sent us the wrong way and now we had to battle back through the thousands of people behind us to get to the correct entrance! Then we discovered that the boys' seats were on the other side of the arena and not directly behind us as promised when booking. Fortunately David was sitting with them but we wanted to watch it together. So thoroughly unimpressed with the NEC.
But the show made up for it. The first hour had Tiff Needel and Vicky Butler Henderson presenting various races around the indoor circuit which were impressive. During the break we managed to get the boys and David on the wheelchair platform for the rest of the show. The Top Gear gang did a one and a half hour show which comprised of various displays interspersed with the usual top gear cocking around including a hilarious motorbike sidecar football match. The boys loved it and despite the hassles it was well worth going.
We got the VIP parking arranged again for Muse, so other than the horrible 2 hour journey it wasn't too stressful. We got there with sufficient time to queue in the slowest queue ever for merchandise. People in front of us were actually trying on T shirts for size!
We had seats on the front wheelchair platform and the boys were fairly nearby in the seats behind us. The stage layout was unusual as they had decided to have seating behind the stage at the middle tier. I guess it allowed a couple of hundred extra tickets to be sold but it meant that they built a walkway around the back of the stage and built the sides up high. It meant that the back of the stage was obscured and although I could see the band most of the time, having a huge section of stage side wall my field of vision was quite distracting.
Muse opened the show with a couple of tracks from the new album, off which they played almost every track during the gig. With an increasing back catalogue to choose from, they still managed to include many old crowd pleasers including Jake's favourite, Plug in Baby. Matt Bellamy gave Jake a new challenge by playing the main riff while spinning around with the guitar above his head. I can imagine the carnage in Jake's bedroom!
They played faultlessly as usual with the singer hitting even the most ridiculously high falsetto note. However there is a small part of me that wonders if the 3 of them and the session keyboard player stopped playing, how much sequencers were being used. I think sometimes I would rather hear a less album perfect reproduction in favour of a rawer live sound. Great gig though.
On Saturday we headed to Birmingham for the Top Gear show. I took the boys a couple of years ago when they did both a London and Birmingham show but for whatever reason it's only Birmingham now. But Luke is such a massive Top Gear fan, we decided to go and commandeered my sister's husband David to help with the driving. Our show was at 3-45, so we planned to arrive at 2 to look around the exhibition although by the time actually got in we only had 45 minutes. It turned out to be sufficient as it was much smaller than the Earls Court one. The boys were very happy to see a Bugatti Veyron for the first time.
Our experience of the show's organization hadn't been great so far having been directed to the wrong gate to get dropped off then David had to drive somewhere else to get a ticket for disabled parking.
Next we were ushered with everybody else to the arena entrance only to discover 15 minutes later they had sent us the wrong way and now we had to battle back through the thousands of people behind us to get to the correct entrance! Then we discovered that the boys' seats were on the other side of the arena and not directly behind us as promised when booking. Fortunately David was sitting with them but we wanted to watch it together. So thoroughly unimpressed with the NEC.
But the show made up for it. The first hour had Tiff Needel and Vicky Butler Henderson presenting various races around the indoor circuit which were impressive. During the break we managed to get the boys and David on the wheelchair platform for the rest of the show. The Top Gear gang did a one and a half hour show which comprised of various displays interspersed with the usual top gear cocking around including a hilarious motorbike sidecar football match. The boys loved it and despite the hassles it was well worth going.
Thursday 8 November 2012
5 Years Ago Today....
It is exactly 5 years since I received my official diagnosis; November 8th 2007. This puts me in the 20% survival group. Apparently 10% survive 10 years so having lasted 5 years, I have a 50% chance of lasting another 5! Anyone reading this who has lost someone to MND within the more typical timeframe might consider me extremely fortunate. And maybe I am, but another 5 years living like this is going to be very tough on me and the people around me.
My progression hasn't been a steady decline but a fairly rapid one for 3 years followed by 2 years of almost no deterioration (although some of the very subtle changes have had significant consequences; losing the ability to drive the wheelchair being the most significant). This pattern isn't unheard of although such a long hiatus is unusual and it does seem strange that it's relented without any apparent reason.
I just wish this plateau had occurred earlier because living like this is so unpleasant. Being confined to a wheelchair because of being unable to walk is an absolute breeze compared to the other losses and it's last on my "fantasy cure" wish list behind talking, using my arms and eating & drinking. I consider being unable to walk a mild inconvenience in comparison. Although at my diagnosis consultation 5 years ago, being told "confined to a wheelchair in 12 months is possible but almost certain in 2 years" was devastating. It just goes to show you how 'acceptance' is such an important approach with this disease. After 5 years I have certainly, although not consciously, changed my outlook from "dying from MND" to "living with MND". My thoughts are no longer dominated by thought of dying but instead I just remind myself occasionally that this plateau isn't indefinite.
With the possibility of living or rather existing like this for some time, I know I should fill the days with something more meaningful. Despite my criticism of Stephen Hawking, I have to give him credit for what he has achieved and it does make me feel guilty that I am wasting the time I have. I think my coping strategy is partly to blame. When life has for 90% of the time shrunk to the confines of sitting in one place staring at a screen, haven't had a proper conversation for 3 years or tasted food or drink for as long, I think it's inevitable that one's psychological state changes. I have always thought that the song title Comfortably Numb is the best description. A state of mind that is doesn't register disappointment, frustration or sadness. One that has become conditioned not to care too much about anything, because you don't miss something you don't care about. It's kept me sane but at the cost of becoming apathetic and devoid of enthusiasm.
Theoretically I can do almost anything on a computer that anyone could, albeit slowly. But mustering enthusiasm is difficult. One thing I have been doing is helping the boys with their latest obsession; a computer game called Minecraft. It's obviously very addictive and involves building worlds with friends online. At least it isn't violent. But there are countless modifications and add-ons available which involve varying degrees of complexity to install. Recently I setup their own server so they can host a world which their friends can connect to, which has given them some kudos. I would rather they didn't spend so much time on it but it's about the only thing I can help them with and it's nice to see them excited about a new mod I have installed. I would like to teach them how to do the modifications themselves but although I can write instructions, the process can vary and eyegaze typing is just too slow in a training situation, especially when you are dealing with an 11 year old's patience levels!
So it's not quite solving the mysteries of time and space but it gives me a sense of purpose.
As for the future; well statistically there is more chance of surviving another 2 years now than there was in 2007. And I am not sure that's necessarily a good thing.
..
My progression hasn't been a steady decline but a fairly rapid one for 3 years followed by 2 years of almost no deterioration (although some of the very subtle changes have had significant consequences; losing the ability to drive the wheelchair being the most significant). This pattern isn't unheard of although such a long hiatus is unusual and it does seem strange that it's relented without any apparent reason.
I just wish this plateau had occurred earlier because living like this is so unpleasant. Being confined to a wheelchair because of being unable to walk is an absolute breeze compared to the other losses and it's last on my "fantasy cure" wish list behind talking, using my arms and eating & drinking. I consider being unable to walk a mild inconvenience in comparison. Although at my diagnosis consultation 5 years ago, being told "confined to a wheelchair in 12 months is possible but almost certain in 2 years" was devastating. It just goes to show you how 'acceptance' is such an important approach with this disease. After 5 years I have certainly, although not consciously, changed my outlook from "dying from MND" to "living with MND". My thoughts are no longer dominated by thought of dying but instead I just remind myself occasionally that this plateau isn't indefinite.
With the possibility of living or rather existing like this for some time, I know I should fill the days with something more meaningful. Despite my criticism of Stephen Hawking, I have to give him credit for what he has achieved and it does make me feel guilty that I am wasting the time I have. I think my coping strategy is partly to blame. When life has for 90% of the time shrunk to the confines of sitting in one place staring at a screen, haven't had a proper conversation for 3 years or tasted food or drink for as long, I think it's inevitable that one's psychological state changes. I have always thought that the song title Comfortably Numb is the best description. A state of mind that is doesn't register disappointment, frustration or sadness. One that has become conditioned not to care too much about anything, because you don't miss something you don't care about. It's kept me sane but at the cost of becoming apathetic and devoid of enthusiasm.
Theoretically I can do almost anything on a computer that anyone could, albeit slowly. But mustering enthusiasm is difficult. One thing I have been doing is helping the boys with their latest obsession; a computer game called Minecraft. It's obviously very addictive and involves building worlds with friends online. At least it isn't violent. But there are countless modifications and add-ons available which involve varying degrees of complexity to install. Recently I setup their own server so they can host a world which their friends can connect to, which has given them some kudos. I would rather they didn't spend so much time on it but it's about the only thing I can help them with and it's nice to see them excited about a new mod I have installed. I would like to teach them how to do the modifications themselves but although I can write instructions, the process can vary and eyegaze typing is just too slow in a training situation, especially when you are dealing with an 11 year old's patience levels!
So it's not quite solving the mysteries of time and space but it gives me a sense of purpose.
As for the future; well statistically there is more chance of surviving another 2 years now than there was in 2007. And I am not sure that's necessarily a good thing.
..
Tuesday 6 November 2012
MOvember
Tracy's brother Jeremy is raising money for the MNDA by participating in MOvember, which if you don't know, involves growing a moustache throughout November . Hopefully apart from raising money for the MNDA we can look forward to some amusing facial topiary!
He told me if he hits £1000 he will sport a Village People design (ok, he didn't but we can hope).
If you would like to support Jeremy visit
http://www.justgiving.com/jeremyalter
..
He told me if he hits £1000 he will sport a Village People design (ok, he didn't but we can hope).
If you would like to support Jeremy visit
http://www.justgiving.com/jeremyalter
..
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